Division of Advanced General Pediatrics and Primary Care, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Mary Ann & J. Milburn Smith Child Health Outcomes Research and Evaluation Center, Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
Pediatr Pulmonol. 2023 Dec;58(12):3416-3427. doi: 10.1002/ppul.26665. Epub 2023 Sep 13.
Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management.
A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end-tidal carbon dioxide (EtCO ), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models.
Patients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within-patient comparisons revealed that EtCO (break-vs-asleep 2.55 mmHg, d = 0.79 [0.42-1.15], p < .001; awake-vs-break 1.48, d = -0.49 [0.13-0.84], p = .02) and RR (break-vs-asleep 16.14, d = 2.12 [1.71-2.53], p < .001; awake-vs-break 3.44, d = 0.45 [0.10-0.04], p = .03) were significantly higher during ventilator breaks.
RPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.
建议对使用有创家庭机械通气（IHMV）的儿童进行门诊监测，但获得医疗护理可能存在困难。本研究旨在检验远程（家庭）数据收集在慢性 IHMV 管理中的可行性和可接受性。
采用 IHMV 项目、家庭护士以及使用 IHMV（0-17 岁）的英语和西班牙语儿童的父母（监护人）的共同设计研究方法（n=19）。原型设计后，父母使用远程患者监测（RPM）套件收集患者的心率、呼吸频率（RR）、血氧饱和度、呼气末二氧化碳（EtCO ）和呼吸机压力/容积 8 周。使用定性方法和系统可用性量表（SUS）分析用户反馈。使用混合效应模型计算清醒、睡眠或休息后患者各项指标的预期边际均值差异。
患者的中位年龄为 2.9 岁，11 名（58%）患者中断呼吸机通气。RPM 数据的录入率平均为 83.7%（SD±29.1%）周。护士的 SUS 评分为 84.8（SD±10.5），父母的 SUS 评分为 91.8（SD±10.1）。超过 90%的父母认为 RPM 数据收集是可行的，并且与他们孩子的护理相关。患者自身比较结果显示，EtCO （休息-睡眠时为 2.55mmHg，d=0.79[0.42-1.15]，p<.001；清醒-休息时为 1.48，d=-0.49[0.13-0.84]，p=0.02）和 RR（休息-睡眠时为 16.14，d=2.12[1.71-2.53]，p<.001；清醒-休息时为 3.44，d=0.45[0.10-0.04]，p=0.03）在呼吸机中断时显著升高。
在使用 IHMV 的儿童中，RPM 数据收集是可行的、可接受的，并且可以捕捉到呼吸机中断期间有临床意义的生命体征变化，支持 RPM 在 IHMV 管理中的临床应用。
